Month: April 2018

There is a word that anyone who suffers from MS dreads to hear, and that word is progression.

The primary definition of progression is “the process of developing or moving gradually towards a more advanced state.” Normally that’s a good thing, but not in our case, because if something is progressing in the MS world, it means our bodies are breaking down, and we’re basically screwed.

I’m not familiar with the relapsing-remitting world because I never lived in it. Mine was progressive right from the start, although I didn’t realize it after the initial treadmill incident. It took a period of time and one particularly shocking episode to realize that what I had was not only here to stay, but was permanently entrenched and getting worse.

Over time, I began to define progression in my own terms, and discovered that while doing whatever I could to stop the progression was a noble quest, the best I could do in reality was retard the speed in which the disease advanced. I also learned by reading what I could about MS, including the personal experiences shared on various blogs and message boards, that like the disease itself, progression is different for everyone.

In my case, it has stayed in one place. In the beginning, my progression moved at a snail’s pace, slow but consistent. The best way I can describe the way it moved within my leg is to compare it to the old mercury thermometers, like this one.

For those of you who aren’t familiar with these, the mercury inside the glass enclosure rises with your temperature. Using that analogy, the mercury started in my foot and slowly moved north, as the disease doggedly consumed my right leg. Once it got to my calf, the pace of my progression changed.

From that point on, when the mercury moved north, it occurred in quick, sudden bursts. I would literally go months where I thought the progression had finally stopped when, out of the blue, it jolted upwards, moving from mid-calf to just below the knee. Thus began the period where I had these immediate and noticeable changes. The odd thing is, the progression would wobble. The weakness would move north and make things worse for a few days/weeks, then move back down, improving to where it was before the sudden change. Like a yo-yo, this would occur over a period of time before the progression finally settled on the new high level mark when it first appeared. It has progressed in this manner ever since, the most recent episode occurring several months ago when it moved to just above my knee, forever complicating my ability to walk, and every other activity that requires the use of my legs.

Is this true progression? I certainly think so, but I think my neurologist sees things a little differently. While it has progressed within the limb, which isn’t trivial, it remains confined to that limb and has not spread elsewhere. His main concern, besides doing what we can so I don’t lose complete use of the leg, is to prevent the progression from branching to my arms and hands, which would signify a significant and troublesome change. He’s told me on more than one occasion that is one of his priorities, and has actually gone as far to predict what limb would be affected next.

The yo-yo type characteristic of the way my symptoms have progressed keeps me guessing. For instance, I’m so in-tune with my body now that if I feel the slightest change, I’ll wonder if it has something to do with the MS, and if this is the start of something bad.

Here’s a perfect example. I’m a good typist. I can lay down a lot of words from the keyboard in a very short period of time, and have always had exceptional accuracy. Over the last six months however, my accuracy has gone to hell. Is there a reason for that? Does it have anything to do with the MS? Is this the beginning of it invading my hands, or am I just becoming sloppy?

This line of thinking occurs every single time there seems to be a new development. I wonder if I might be making something out of nothing, and if I dismiss whatever it is as inconsequential, I’ll invariably being thinking if that is a smart thing to do. I never call the neurologist in these situations because I don’t want to appear neurotic.

Sometimes I wish that if I’m going to realize my worst fears about living in a world of pain beyond my comprehension, becoming wheelchair bound, and completely dependent upon others, that it happen suddenly and savagely so there is no doubt. It’s the doubt and second-guessing that drives me nuts, you see. It doesn’t take long however for me to realize I am a lot better off than most (at least I think I am), and that I’m being an idiot because wishing for that to occur is insane. This realization always settles the nerves, which allows me to start compartmentalizing again, and resume my merry voyage on the SS Denial.

Hopefully it will be a long trip. It’s lasted almost eleven years so far.

Like this:

This is a story about allowing your mind to write checks your body can’t cash.

I don’t think I’ve even shared this with K, primarily because I know what she would say, and I’ve done enough self-flagellation. The long and short of it is that when you have any kind of disability, there are things you know you probably can’t do anymore, and it’s never smart to test that theory. I wasn’t smart one summer afternoon almost four years ago, and my consequence could easily have been tragic.

We were vacationing at Martha’s Vineyard, and Shodan and I were at Lucy Vincent beach while K and her girlfriend were out and about. The surf was rough, as it had been during our entire stay. There is a color coded display as you walk on the beach that describes the water conditions and what they represent in terms of surf, undertow and things of that nature. If the color of the day is red, the beach is closed. If it happens to turn red during the day, lifeguards do their best to get everyone out of the water.

On this particular day, about half-way into our trip, the color on display was one or two levels below the “do not go in” threshold. In fact, it had been that color for our entire stay. I don’t remember the exact color, but you get the point. Any fool could see that the waves were impressive, and the sound they made crashing into the beach was loud. The conditions were perfect for anyone who was into body surfing or had a boogie board. If I remember correctly, there had been a handful of people on surfboards during the previous days.

Shodan had been living in the water and was having a blast. He’d periodically call out to me to join him, but Smart Steve had resisted the call. He had ventured into ankle-deep water on a handful of occasions, and needed the cane to stay upright because the undertow was strong and the waves would occasionally crash on his legs. Smart Steve knew that if he was having a hard time in ankle deep water, going out any further would be a fools errand, particularly when he considered the fact that the tide was high and a handful of very large rocks scattered about the ocean floor, easily visible during low tide, were currently underwater.

But Foolish Steve wanted in. He hadn’t frolicked with his son all week, and knew that once he got out to about chest level, and beyond the crashing waves, the buoyancy of the water would mitigate his symptoms. Once in, he could maneuver around easily in the zero-gravity like environment, bob like a cork on the water, and enjoy the experience. The more he thought about it, the more sense it made, so Foolish Steve plotted his strategy.

Limping back to his blanket, and almost stumbling as his foot caught in the fine sand, he ditched his cane, trudged out to the surf, and waded in. Spying a large oncoming wave, he half-dove half-fell directly into it, and swam out to sea. Feeling his body rise and fall with the incoming surf, he stopped shortly thereafter, when it became obvious he had cleared the worst of the waves. Standing up in neck deep water, he surveyed the scene, saw he was well beyond the danger zone, moved closer to the shore until the water was chest deep, and stood upright.

So there I was, basking in the bright sunlight, enjoying the feel of the cool water on a warm summer day, watching the gulls fly overhead, and the mist of the surf that had crashed upon the beach drift into the cliffs. I could move freely and not feel clumsy, which allowed me to rough-house with Shodan for an extended period of time.

When it became time to return to my blanket, I had to plot an exit strategy. The smartest thing to do would have simply been to have Shodan guide me to the shore, and once it was shallow enough, walk toward the sandy beach with him leading the way, my hands on his shoulders. But, I was feeling my oats, let my bravado overtake common sense, and decided to body surf my way into shore.

This strategy worked temporarily. The first wave didn’t get me very far, so I emerged and tried to stand upright to prepare myself for the next one. I only managed to get one foot planted, and hadn’t yet taken a full breath, when the next wave slammed me from behind, and plunged me into the cauldron.

Since I was off balance to begin with when the wave hit, my feet were nowhere near the ocean floor as I was being rolled around like I was in a washer’s spin cycle. I thrashed around, trying to get my body upright, but not having the use of two good legs was a detriment. I became disoriented, but the bottom of my foot luckily scraped against the ocean floor, and I was able to dig one heel into the sand. To say my adrenaline was pumping is an understatement. That temporarily brought the spin cycle to a stop.

I tried to get both feet planted and lift my torso out of the water so I could take a breath, but another wave crashed and spun me around some more. Somehow, I remain calmed and held my breath. I think subconsciously knew I was close to shore, and that if I could hang in there, something would touch the ocean floor again. I’d be even closer to shore, which might allow me to get on my hands and knees, and at get my head out of the water.

If I had I panicked, I would have inhaled water and, with the boiling ocean tossing me around like a rag doll, drowned less than twenty feet from shore. The problem was that this particular spin cycle lasted longer than the previous one. My lungs were burning, and I realized that if I did not get air soon I’d be in serious trouble.

Fortunately, my back and butt scraped the ocean floor. I instinctively managed to get on my hands and knees, knelt upright, and poked my head out of the water. My eyes, which had been closed tight throughout the ordeal, popped open as I gratefully took a deep breath. I was still a little disoriented, but once things came into focus I could see I was facing out torwards the open sea and was immediately greeted by another wave, which hit me in the face and threw me backwards a few feet. Fortunately, my mouth was closed, and it was shallow enough by that point where I could extend my arms and push myself back onto my knees.

Shodan was in deeper water looking around to see where I was. I wasn’t sure if he had noticed what happened or recognized the trouble I was in, but his eyes locked onto mine and he smiled. I called to him and he free-styled over. When he arrived I placed him in front of me, stood up, placed my hands on his shoulders and had him lead me towards the safety of the beach. As we approached the shore, my legs, which were trembling slightly, could feel the strength of the incoming waves and the force of the undertow. I also noticed that the large rocks I had mentioned earlier were a short distance from where I finally emerged from the angry sea. If I had crashed upon those as I was being tossed around, it would have been game, set, match.

Arriving at our blanket, I sunk into the beach chair and grabbed a towel while Shodan ran back into the water. The gravity of what had just occurred hadn’t fully registered, but I knew that I was very fortunate to be breathing.

Looking back at this, I don’t remember how long I was submerged and helpless. I think it was somewhere between half a minute and a minute, but it felt much longer. The experience was harrowing, to say the least. Had I been able to fill my lungs with air before the first wave hit, the situation might not as felt as desperate, but I didn’t have that luxury. I couldn’t see anything, felt like a tumbleweed in a tornado, and was trying to stay focused so I wouldn’t do something to compound my stupidity, like inhale. Fortunately, I didn’t run out of time.

It’s funny what you think about when confronted with something like that. I remember being embarrassed that I might die on vacation in less than six feet of water, and the scene that would cause. I worried terribly about K, Shodan, my parents, and what this would do to them. I also remember thinking K would want to strangle me if she knew what was going on.

The surf did not subside during the remainder of our stay. Needless to say, other than walking along the beach, I did not step foot in the Atlantic again.

That day taught me are there are certain lines you don’t cross. I already knew that, but did not think of myself as a disabled person. I thought my symptoms might have progressed, because walking was a little harder, my limp was more pronounced, and my balance seemed more tenuous. But my progression was so incrementally slow, I wasn’t sure if this was real or my imagination. But walking in the fluffy sand was much more difficult compared to our visit the previous year. That should have been all the confirmation I needed to understand the progression was real, yet I still ventured out into that tempest. Maybe I though I was bullet-proof. Whatever the reason, it was a foolish, arrogant and reckless act.

Unlike the last two days, I couldn’t think of a quote to share, so I decided to troll through the internet. To save myself time, I decided to latch onto the first quote I saw that made be feel something, expecting to share something profound and uplifting. Well, I found something profound alright. It certainly struck a nerve, but before I share this with you, be advised what follows is more rant than rave:

So, if we lie to the government it’s a felony, but if they lie to us its politics Bill Murray

This quote pretty much sums up my disgust with the current state of our local and national politics. Honesty and politics have never gone hand in hand, but the disconnect has been taken to new heights, and it doesn’t appear that anyone seems to care. Self-interest and greed has destroyed compromise and common sense. All of which leads me to another quote (okay, I’m cheating again – sue me).

The difference between genius and stupidity is that genius has its limits Albert Einstein

I’d like to think that no matter which side of the aisle you fall on, you can recognize how broken we’ve become in terms of our ability to at least see and consider another point of view. I’m afraid that if we continue on the same path we’ve traveled over the last decade plus, the divide will become so wide it will take something cataclysmic to mend it. All of which will prove Einstein knew what he was talking about.

Today’s nominees include a friend and two fellow MS warriors.

Karyn is someone I’ve been following for a while but had the pleasure of meeting during our recent blogging soiree with Grace and Superman. Karyn writes about real stuff and is as down to earth as you can get. Check her out when you can ( https://karynsdomain.wordpress.com/ )

Hannah ( https://mymultiplesclerosisandme.wordpress.com/ ) and Ashlie ( https://crawlingthroughmy20s.wordpress.com ) both suffer from MS and share their trials and tribulations. What I find interesting about their work, besides their writing, is that they are both in their twenties. They write from a completely different perspective than I do, which is both refreshing and sad. Refreshing in the sense that they are brave to share their experiences living with this beast at such a tender age, and sad that they have to deal with this so early in their lives.

This ends my three day homework assignment. Hope I got a passing grade.

2. Write one quote each day for three consecutive days (3 quotes total)

3. Explain why the quote is meaningful for you.

4. Nominate three bloggers each day to participate in the challenge

Thanks again to Angela, who writes the Fuck MS blog, for bestowing this honor upon me. Please check her out at: https://fuckms.ca

You may have already figured this out from the picture, but TODAY’S QUOTE IS (drum roll)……… Get busy living, or get busy dying.

This is a quote from Andy Dufrense in the movie The Shawshank Redemption, which might be my favorite movie of all-time. It certainly is in the top three. It’s theme of of hope and perseverance under unfair and adverse conditions, is inspiring. I love it when the underdog wins, and the acting and screenplay is superb! I’ve watched it so many times I’ve lost track. I can’t imagine anyone not knowing about this flick, but if you don’t, do yourself a favor. Go on Netflix and look it up. You will be glad you did.

The reason this quote has so much meaning is because it epitomizes my attitude since I was diagnosed. MS, or any significant disability/affliction for that matter, changes your life and, in my opinion, leaves you with two choices.

You can either accept your new reality, confront it head on, and make the best of a bad situation. Or, you can curl into the fetal position, say whoa is me, lament about all the things that you’ve lost, become obsessed with the shitty hand you’ve been dealt, and wither away. In other words, you can get busy living or get busy dying.

Today’s nominees to participate in this challenge are:

Walt who authors Walt’s Writings is a poet, an old salt with a romantic soul. His poetry resonates with a hopeless romantic like myself. He paints images and evokes emotions we can all relate to with his simple words. I highly recommend you give him a look.

Last but not least is Grace, who authors MS Graceful…NOT! Brutally honest and funny, Grace doesn’t pull any punches. In fact, she’s already been nominated, by Alyssa I believe, but I’m nominating her again because she is either not paying attention or avoiding the issue. HELLO GRACE! Time to get your coffee and get to work! https://gracefulnot.com/blog

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Thank you to Angela of Fuck MS fame for the nomination. Her’s was among the first blogs I discovered when I started mine, and I’ve always enjoyed her frankness and willingness to bare her soul, not to mention her writing. I’m not the most technically savvy person in the world, otherwise I’d drop her a link to her site right here. So I will list it the old fashioned way and encourage you to give it a look: https://fuckms.ca

It was hard to come up with three quotes, and if I were to do this next week I might have come up with different ones. The quotes that follow have always resonated with me for a variety of different reasons, and here they are:

Try to be a rainbow in someone’s cloud – Maya Angelou

Life is what happens when you’re busy making plans – John Lennon

A journey of 1,000 miles begins with a single step – Lao Tzu

My next obligation is to nominate three more victims, I mean bloggers, to join in the fun and games.

The first is the great Billy Mac, aka Superman. I love his writing, his point of view, and the fact he isn’t afraid to poke fun at himself, something we have in common. Plus, he’s been feeling a little down lately and I thought this might give him something to occupy his thoughts, perk him up, or piss him off. Either one is good enough for me: https://goodtobealivetoday.wordpress.com

Nominee number two is Tom, author of the blog Tom Being Tom. I’m not sure how I stumbled across Tom. It was probably through either Bill or Grace, but I love his style and the topics he writes about. His last topic: https://www.tombeingtom.com/routine/ definitely confirmed that we are cut from a different cloth.

My final nominee is Susan: https://flowergirlink.wordpress.com Susan turned me onto poetry, and, for those of you who read my blog, had the uncanny ability to shame me into writing a poem. Her poetry sings, and she writes fine prose too. What drew me to Susan however is her story, but if you want to know more about that you’ll either have to read her blog, or the guest post she authored on mine several weeks ago.

Like this:

I wonder if I’m doing this right. I often thought of this as I wrote my first novel, wondering if my process was similar to other authors or if I was in an orbit of my own.

Jeremy Mac (no relation to Billy) is among the Facebook friends I quickly accumulated. He was one of the first who agreed to read my manuscript and offer a quote I could eventually take to prospective publishers. We hit it off from the start and frequently stay in touch via Messenger.

Requesting a published author to review a manuscript is a big ask. Most of them have other jobs in addition family obligations and their writing obsession. Jeremy didn’t hesitate, but he did ask if I would read his book Embracing the Darkness, and offer a review on Amazon. How could I say no?

Honestly though, I was skeptical when I saw the book’s cover because his genre is not among my favorites. Jeremy was so gracious with his time and generous in his praise of my work. What would I write if I didn’t like it, or thought it was just okay? These concerns fortunately never came to fruition because good writing is good writing, and in this case, it literally reminded me that you should never judge a book by its cover. Other than one scene that made me cringe, I genuinely enjoyed the story.

Jeremy’s most recent work Shadowmancer, is a riveting read. It’s intoxicating, creepy, and has a unique supernatural hook that I have never seen before. I think it is going to enjoy a lot of success.

Jeremy’s creative process is different from mine, which I think proves two things. The first is that each author’s approach is unique and is neither right nor wrong, but what suits them best.

The second is what I’ve always suspected. Authors are very interesting and colorful characters.

Thanks for sharing your story Jeremy.

“How did you come up with the idea for that story?”

Oh how I do love this question, even if I don’t have an answer for it, because when asked, often with glowing enthusiasm, that alone tells me that my story genuinely excited or wowed or horrified or turned on the inquisitive reader only in a way that mystifies the mind. For me, as a writer, no question (or hell, no amount of praise for that matter) is better.

However, I do not begin writing– a book, a novella, a short story, a poem– expecting for the work to be received that way, or simply thoroughly enjoyed, by others. No. Such thoughts don’t even exist until the work is somewhat of a half-ass clean draft.

I write, first and foremost, for myself. Because once an idea for a story pops into my head, it begins to tickle and entice, nearly to the point of seduction. It can be likened to a little writing minx stirring inside my head. Sometimes she whispers, “Come on. Breathe into me…” followed by a feathery touch of allurement. Other times, if I put her off long enough, she’ll stamp her foot and yell, “Hey! Get to it!”

So I begin to put down a few words, and then those words take shape, form colors, characters and atmosphere. It starts to play out like a movie on the theater screen of my mind and before I know it, a new world is created.

Words don’t always come easy, though. All too often they will stall or stop completely, as if the little minx stops the reel of film rolling inside my head.

“Oh you little bitch,” I’ll growl at her. “Bring me all this way just to slam me against a brick wall. Grrr!”

But I push and fight, chipping away at that hated wall, eventually clawing my way through it to the final finish.

And then edits begin.

An entirely whole other beast.

Ugh!

But, how did I really come up with the idea for that story?

Concerning my first two books, the answer is simple. Pleasure Spiked With Pain and Frozen Faces @ 4:20, both written years ago, are loosely based off of my younger, careless life, so the near facts were nothing to recall. And as far as the fictionalized areas went, which are in fact the greater portion of the books, well…a good amount of the words were inspired/influenced by a lifted head.

For those of you who are not in the know, I’ll not go in depth on cannabis’s potential to unlock doors of the imagination, unleashing fresh new worlds you never knew existed. Just be assured that cannabis does, or, at the very least, has the potential to do so. It’s an excellent antidote for that hated Writer’s Block as well. It’ll torpedo right through a brick wall.

As far as the rest of my work goes, which are all a good distance from the contemporary genre that my first two novels are under and were not written under the influence of cannabis thank you very much (Little sigh. Ok, maybe a teeny tiny bit here and there. Eye roll.), the answers are not so simple. Sometimes what sparks an idea may be something I saw on TV or a song I heard or something that happened throughout the day. An article I read. A conversation I had. A dream…

Oh the dreams. Such gifts that can be easily wasted if you do not possess the discipline to write them down the moment you wake, when the dream is fresh and still nearly pulsing with life, because, woe you make the mistake of putting it off or, even worse, going back to sleep. I’ve regrettably done both and found time after disappointing time that the dream fades to the point of a hazy memory, only to recall later, if you’re lucky, a slight idea of what it had been about. For several years now I’ve slept with pen and paper at my bedside. No matter what time it is, no matter how tired I am, when I wake from a dream alight with potential for a cool story, or perhaps just a scene within a story, I’ll snatch up that pen and paper and will not stop writing until I have even the most insignificantly minute detail jotted down.

And then there are the ideas that have always been there, those that have dwelled within, or even haunted me, ever since I can remember, their origins long forgotten but, over time, ever evolving until finally it comes to a point when I must pen them to life.

Embracing The Darkness, an erotic hardcore horror released last December, was such a story, lurking inside, haunting, likely due to my growing up watching all the great 80’s horror flicks. I love horror, especially the hardcore fare, but I’d always been very reluctant to write it, and quite honestly it is due to the fact of how hardcore I thought I might get , and that frightened me. It may seem ridiculous, but what really gave me pause was fearing what people might think. Like, “Oh this guy is a real fucking sicko.” But after much encouragement from others, I gave it a go. Turns out, it’s one of the best things I’ve done. It was quickly snatched up by a publisher and has gotten rave reviews. Not to mention I’ve been asked numerous times, “How did you come up with the idea for that story?”

Big grin.

But my newest work probably tops them all.

Shadowmancer is a supernatural erotica about someone whose shadow is an entity of itself, an entity that thrives off of the sexual energy of others. My readers know just how erotic I can be, but this one licks the icing clean off the cake.

The idea was born from the movie Bram Stoker’s Dracula, starring Gary Oldman. I was about fifteen years old when I first saw the movie but I’ve watched it a few more times over the years. There’s a scene when Dracula enters a candlelit room, and his shadow continues to stretch across the wall, reaching for an unsuspecting Keanu Reeves. This eerie image, both horrifying and erotic, branded itself in my mind. Ever since then I’ve quietly played with the idea of such a shadow, one that not only acts as a direct extension of its host, but sentient as well. I let that supernatural fantasy incubate up until a few years ago and then– no doubt spurred by my little minx– I decided to try to breathe some life into it. So far, according to my ARC (Author Review Copy/Approved Readers Copy) readers, Shadowmancer is being well received. A good number of them have already asked me that one question I love so much, and some of them haven’t even finished reading it!

All because of the seed of an idea that was planted so long ago, before I had even begun to entertain the thought of being a writer. Before I understood the creative power of an idea.

Ideas, for me, are created from dreams, through observation, losing myself to the wonder of my surroundings, observing what is there and breaking it down and piecing things back together to suit myself, my imagining.

My world.

And, of course, to appease my little minx.

I cannot close without first saying that this is a great blog! Great writing! I am a fan of it, and I am honored that Steve asked me to be a part of it. Thanks buddy!